The family of Charlie Marriage, who died from SUDEP in 2021, have worked alongside SUDEP Action as well as the Independent Pharmacies Association (IPA) to create the ‘Charlie Card’ – to let people with #epilepsy know their legal right to emergency meds in a crisis. sudep.org/charlie-card/ ESNA

People grieve in different ways, even within the same family. Our #coffeeclub meetings provide a safe space for the bereaved to talk and listen to others who have gone through – or are going through – similar experiences and situations. Email [email protected] #SUDEP #epilepsy

We’re halfway through the #30for30 Challenge 🎉 Huge thanks to everyone taking part daily! Unlike many charities, SUDEP Action receives no government funding—your support is vital. Sign up or donate today: justgiving.com/campaign/sudep… #SUDEP #epilepsy

Good luck to Ivan Williams who is cycling from London to Brighton on Sunday in memory of his brother Lee. “Back in 2017, I lost my brother Lee to epilepsy. He was 27 years old when he died.” Support Ivan here: justgiving.com/page/ivan-will… #SUDEP #epilepsy #London #Brighton

In a world first we will broadcast over 100 untruths back to back, with each extensively fact checked. Donald Trump v The Truth. Wednesday 10pm.

Support Nick Jane for his last day of cycling from John O’ Groats to Land’s End in memory of his sister Tanisha: justgiving.com/page/nick-jane… "We’re doing this to raise money for SUDEP Action, in memory of my amazing little sister, who sadly passed away in 2012 due to a seizure."

Phil Berger and the friends of Jason Morland are challenging themselves with a 17K mountain hike in the Lake District on 27th Sept: justgiving.com/page/philip-be… “Jay really was loved by everyone who met him, he had a gift of finding time to help or chat to anyone who needed him.”

Get involved with our #30for30 Challenge! Donating just £30 could fund a half-hour support session for someone bereaved by epilepsy. Donate today: justgiving.com/campaign/sudep… #SUDEP #epilepsy #epilepsyawareness

Are you living with or caring for someone with a #RareDisease? Are you a #RareDisease advocate? Please take 5 minutes & complete a short survey to help the HSE Ireland #NationalRareDiseasesOffice to learn about your awareness of #EuropeanReferenceNetworks bit.ly/4mmzoWZ

#Ataxia_Spotlight Ataxia patients often feel daunted and alone when they are first diagnosed. The Chief Medical Officer in the home is often the patient .... #Ataxia #patients #charity #Cymru #Wales International Ataxia Awareness Day September 25th #IAAD #IAAD25 #IAAD2025

We’re in Paris today for the 9th Global Symposium on Ketogenic Therapies and 5th European GLUT-1DS Meeting, joining Matthew's Friends and international experts to share the latest research in epilepsy and metabolic therapies. In GLUT-1 Deficiency Syndrome, the brain cannot

Our Research Manager Ben represented us at #ILAE2025 where our SUDEP & Seizure Safety Checklist was mentioned during a “SUDEP – What every neurologist should know” section. Rapid progress in discussing SUDEP in medical circles/with patients in the last 30 years was highlighted.

Cases of #SUDEP in children, men & women have been caused by the change in UK policy on the use of valproate. We will not rest until there is accountability & justice for those who have died and been harmed under this policy. Email [email protected] if you have been affected.

Lynsey Hart recently lost her nephew, Mason, to #SUDEP at age 17. Her daughter, Ella, has been fundraising in his memory and has raised £1500 selling homemade bracelets. “We all miss him. I want to raise awareness and money to help SUDEP Action find answers why this happens.”

We are delighted to be on the ground at the National Conference of Independent Community Pharmacists today. Our Policy Officer, Elly Nowell, and Henrietta Hastings are representing us to support community pharmacists around the UK. sudep.org/charlie-card/ #SUDEP #epilepsy

#Ataxia_Spotlight The symptoms of ataxia can vary. Balance and coordination issues are usually the first signs, for example, people may become clumsier .... #Ataxia #patients #charity #Cymru #Wales International Ataxia Awareness Day September 25th #IAAD #IAAD25 #IAAD2025

ICYMI #Ataxia_Spotlight The symptoms of ataxia can vary. Balance and coordination issues are usually the first signs, for example, people may become clumsier .... #Ataxia #patients #charity #Cymru #Wales International Ataxia Awareness Day September 25th #IAAD #IAAD25 #IAAD2025

#Ataxia_Spotlight Many types of ataxia get progressively worse, and patients become dependent on others for all their needs. Patients with #Friedreich’s ... #ataxia #patients #charity #Cymru #Wales International Ataxia Awareness Day September 25th #IAAD #IAAD25 #IAAD2025

Thinking of Danny Tozer and his family today. 10 years on. georgejulian.co.uk/2025/09/22/rem…

We are the only UK charity working alongside those who have lost loved ones to an epilepsy-related death. To find out how we can help, head to our website: sudep.org/bereavement-su… #SUDEP #epilepsy #epilepsyawareness #grief